Irreplicability is framed as crisis, blamed on sloppy science motivated by perverse stimuli in research. Structural changes to the organization of science, targeting sloppy science (e.g., open data, pre‐registration), are proposed to prevent irreplicability. While there is an unquestionable link between sloppy science and failures to replicate/reproduce scientific studies, they are currently conflated. This position can be understood as a result of the erosion of the role of theory in science. The history, sociology, and philosophy of science reveal alternative explanations (...) for irreplicability to show it is part of proper, informative and valuable science. Irreplicability need not equate research waste. Sloppy science is the problem, also when results do replicate. Hence, the solution should focus on opposing sloppy research. (shrink)

Broad genome-wide testing is increasingly finding its way to the public through the online direct-to-consumer marketing of so-called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision-making with regard to the testing offer, we argue that current (...) practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings. (shrink)

Broad genome‐wide testing is increasingly finding its way to the public through the online direct‐to‐consumer marketing of so‐called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision‐making with regard to the testing offer, we argue that current (...) practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings. (shrink)

Background: As genetics technology proceeds, practices of genetic testing have become more heterogeneous: many different types of tests are finding their way to the public in different settings and for a variety of purposes. This diversification is relevant to the discourse on ethical, legal and societal issues (ELSI) surrounding genetic testing, which must evolve to encompass these differences. One important development is the rise of personal genome testing on the basis of genetic profiling: the testing of multiple genetic variants simultaneously (...) for the prediction of common multifactorial diseases. Currently, an increasing number of companies are offering personal genome tests directly to consumers and are spurring ELSI-discussions, which stand in need of clarification. This paper presents a systematic approach to the ELSI-evaluation of personal genome testing for multifactorial diseases along the lines of its test characteristics.DiscussionThis paper addresses four test characteristics of personal genome testing: its being a non-targeted type of testing, its high analytical validity, low clinical validity and problematic clinical utility. These characteristics raise their own specific ELSI, for example: non-targeted genetic profiling poses serious problems for information provision and informed consent. Questions about the quantity and quality of the necessary information, as well as about moral responsibilities with regard to the provision of information are therefore becoming central themes within ELSI-discussions of personal genome testing. Further, the current low level of clinical validity of genetic profiles raises questions concerning societal risks and regulatory requirements, whereas simultaneously it causes traditional ELSI-issues of clinical genetics, such as psychological and health risks, discrimination, and stigmatization, to lose part of their relevance. Also, classic notions of clinical utility are challenged by the newer notion of 'personal utility.'SummaryConsideration of test characteristics is essential to any valuable discourse on the ELSI of personal genome testing for multifactorial diseases. Four key characteristics of the test - targeted/non-targeted testing, analytical validity, clinical validity and clinical utility - together determine the applicability and the relevance of ELSI to specific tests. The paper identifies and discusses four areas of interest for the ELSI-debate on personal genome testing: informational problems, risks, regulatory issues, and the notion of personal utility. (shrink)

A major concern of public health authorities is to also encourage adults to be exposed to enriched environments during the pandemic lockdown, as was recently the case worldwide during the COVID-19 outbreak. Games for adults that require physical activity, known as exergames, offer opportunities here. In particular, the output of the gaming industry nowadays offers computer games with extended reality which combines real and virtual environments and refers to human-machine interactions generated by computers and wearable technologies. For example, playing the (...) game in front of a computer screen while standing or walking on a force plate or treadmill allows the user to react to certain infrastructural changes and obstacles within the virtual environment. Recent developments, optimization, and minimizations in wearable technology have produced wireless headsets and sensors that allow for unrestricted whole-body movement. This makes the virtual experience more immersive and provides the opportunity for greater engagement than traditional exercise. Currently, XR serves as an umbrella term for current immersive technologies as well as future realities that enhance the experience with features that produce new controllable environments. Overall, these technology-enhanced exergames challenge the adult user and modify the experience by increasing sensory stimulation and creating an environment where virtual and real elements interact. As a therapy, exergames can potentially create new environments and visualizations that may be more ecologically valid and thus simulate real activities of daily living that can be trained. Furthermore, by adding telemedicine features to the exergame, progress over time can be closely monitored and feedback provided, offering future opportunities for cognitive-motor assessment. To more optimally serve and challenge adults both physically and cognitively over time in future lockdowns, there is a need to provide long-term remote training and feedback. Particularly related to activities of daily living that create opportunities for effective and lasting rehabilitation for elderly and sufferers from chronic non-communicable diseases. The aim of the current review is to envision the remote training and monitoring of physical and cognitive aspects for adults with limited mobility, through the implementation of concurrent telehealth and exergame features using XR and wireless sensor technologies. (shrink)

To describe the content of practice guidelines on euthanasia and assisted suicide (EAS) and to compare differences between settings and guidelines developed before or after enactment of the euthanasia law in 2002 by means of a content analysis. Most guidelines stated that the attending physician is responsible for the decision to grant or refuse an EAS request. Due care criteria were described in the majority of guidelines, but aspects relevant for assessing these criteria were not always described. Half of the (...) guidelines described the role of the nurse in the performance of euthanasia. Compared with hospital guidelines, nursing home guidelines were more often stricter than the law in excluding patients with dementia (30% vs 4%) and incompetent patients (25% vs 4%). As from 2002, the guidelines were less strict in categorically excluding patients groups (32% vs 64%) and in particular incompetent patients (10% vs 29%). Healthcare institutions should accurately state the boundaries of the law, also when they prefer to set stricter boundaries for their own institution. Only then can guidelines provide adequate support for physicians and nurses in the difficult EAS decision-making process. (shrink)

There is a need for person-centred approaches and empowerment of staff within the residential care for older people; a movement called ‘culture change’. There is however no single path for achieving culture change. With the aim of increasing understandings about cultural change processes and the promotion of cultural values and norms associated with person-centred practices, this article presents an action research project set on a unit in the Netherlands providing care for older people with dementia. The project is presented as (...) a case study. This study examines what has contributed to the improvement of participation of older people with dementia in daily occupational and leisure activities according to practitioners. Data was collected by participant observation, interviews and focus groups. The results show that simultaneous to the improvement of the older people’s involvement in daily activities a cultural transformation took place and that the care became more person-centred. Spontaneous interactions and responses rather than planned interventions, analysis and reflection contributed to this. Furthermore, it proved to be beneficial that the process of change and the facilitation of that process reflected the same values as those underlying the cultural change. It is concluded that changes arise from dynamic, interactive and non-linear processes which are complex in nature and difficult to predict and to control. Nevertheless, managers and facilitators can facilitate such change by generating movement through the introduction of small focused projects that meet the stakeholders’ needs, by creating conditions for interaction and sense making, and by promoting the new desired cultural values. (shrink)

We live in an era where our health is linked to that of others across the globe, and nothing brings this home better than the specter of a pandemic. This paper explores the findings of town hall meetings associated with the Canadian Program of Research on Ethics in a Pandemic , in which focus groups met to discuss issues related to the global governance of an influenza pandemic. Two competing discourses were found to be at work: the first was based (...) upon an economic rationality and the second upon a humanitarian rationality. The implications for public support and the long-term sustainability of new global norms, networks, and regulations in global public health are discussed. (shrink)

Nastava iz prirodoslovnog područja danas se najčešće temelji na principima konstruktivizma prema kojima djeca trebaju biti aktivni sudionici procesa učenja i izgrađivati svoje znanje na temelju iskustva. Metode i sredstva korištena u nastavi prirodoslovnog područja moraju biti prilagođeni perceptivnim potrebama slijepe djece i djece s oštećenjima vida kako bi im se omogućilo aktivno sudjelovanje u procesu učenja. Cilj ovoga rada je opisati posljednje spoznaje o aktivnom i istraživačkom učenju slijepe djece i djece s oštećenjima vida u nastavi prirodoslovnog područja te (...) otkloniti postojeće zablude. Nadalje, rad predstavlja recentna istraživanja koja ukazuju na prilagođene uspješne i visokokvalitetne odgojno-obrazovne pristupe i metode. S obzirom na navedeno, sadržaj rada bit će od koristi nastavnicima iz prirodoslovnog područja, kao i istraživačima inkluzivnih učionica. (shrink)

Neonatal brain monitoring in the neonatal intensive care units (NICU) requires a continuous review of the spontaneous cortical activity, i.e., the electroencephalograph (EEG) background activity. This needs development of bedside methods for an automated assessment of the EEG background activity. In this paper, we present development of the key components of a neonatal EEG background classifier, starting from the visual background scoring to classifier design, and finally to possible bedside visualization of the classifier results. A dataset with 13,200 5-minute EEG (...) epochs (8–16 channels) from 27 infants with birth asphyxia was used for classifier training after scoring by two independent experts. We tested three classifier designs based on 98 computational features, and their performance was assessed with respect to scoring system, pre- and post-processing of labels and outputs, choice of channels, and visualization in monitor displays. The optimal solution achieved an overall classification accuracy of 97% with a range across subjects of 81–100%. We identified a set of 23 features that make the classifier highly robust to the choice of channels and missing data due to artefact rejection. Our results showed that an automated bedside classifier of EEG background is achievable, and we publish the full classifier algorithm to allow further clinical replication and validation studies. (shrink)

These two texts come from a store of papyrus fragments which are at present being examined and worked over at Oxford. They are the property of the Egypt Exploration Society and will be republished in vol. xxxi of the Oxyrhynchus Papyri as Nos. 2544 and 2534; permission for their separate publication here has been granted by the Society in view of the relevance of the former of them to the article by Mr. W. S. Barrett which appears on pp. 58–71 (...) below. We are much indebted to Mr. Barrett and Professor Hugh Lloyd-Jones for many valuable suggestions and criticisms. The nature of both texts was recognized by R. A. Coles, of Magdalen College, Oxford, one of the collaborators in this article. (shrink)

Consideration of the experimental activities carried out in one discipline, through the lens of another, can lead to novel insights. Here, we comment from a biological perspective upon experiments in quantum mechanics proposed by physicists that are likely to feasible in the near future. In these experiments, an entire living organism would be knowingly placed into a coherent quantum state for the first time, i.e. would be coerced into demonstrating quantum phenomena. The implications of the proposed experiment for a biologist (...) depend to an extent upon the outcomes. If successful, then the organism will have been temporarily in a state where it has an unmeasurable metabolism—not because a metabolic rate is undetectable, but because any attempt to measure it would automatically bring the organism out of the state. We argue that this would in essence represent a new category of cryptobiosis. Further, the organism would not necessarily retain all of the characteristics commonly attributed to living systems, unlike the currently known categories of cryptobiosis. If organisms can survive having previously been in a coherent state, then we must accept that living systems do not necessarily need to remain in a decoherent state at all times. This would be something new to biologists, even if it might seem trivial to physicists. It would have implications concerning the physical extremes organisms can tolerate, the search for extraterrestrial life, and our philosophical view of animation. (shrink)